Unfortunately there is as yet no cure and it is pretty hard to swallow when you are told you have on average 2-5 years to live and you are only 53.
I have since been on a search worldwide to try anything that can help to slow it's progression which for me has started in the leg muscles and now causing weakness in my hands and grip too. It has unfortunately affected my left hand first which is my writing hand and leaves my writing looking like I am back in kindergarten and simple things like opening water bottles and lifting normal objects is now too difficult.
Although the doctors are knowledgeable, their only suggestion is drugs that will prolong my life by 2-3 months, but have horrible side effects for me. To add insult to injury, their advice is expensive with little reimbursement.
Therefore, I have been forced to seek alternative treatments to slow the progression of this disease. Unfortunately, these alternatives are not covered by any insurances as MND is not in the forefront of the insurance industry.
I would be totally lost without the support of my husband Steve who now only works part time. He has also become my full-time carer and now cooks all meals, cleans and helps me dress daily.
I decided to tell my story and put up this page at the insistence of my awesome family and close friends.
I have just completed 60 hours of intense hyberbaric oxygen therapy in Melbourne in an effort to flush the bad inflammatories out of the brain which are in turn affecting the motor neurons and muscles in my body.
Though not a cure it has been highly recommended to continue this expensive treatment on an ongoing basis and perhaps ultimately have a portable one for home use. It has helped me to sleep better and ease some of the leg cramping that I continually have.
Any money raised on this page will be put towards the following:
* Hyperbaric oxygen therapy ($150 per hour) - needed ongoing
* Extensive Pilates rehabilitation and equipment to keep movement especially in legs and hands
* New chair / bedding to enable better movement around the house
* Specialised equipment to help with showering and other aids
* Crutches to aid in walking
* When needed - wheelchair to get around in.
* Some expenses to travel locally and interstate to attend oxygen and other medical appointments.
I am out to prove the 2-5 year sentence wrong and stay around for as long as I can and keep inspriring people and spreading the message of health.
Thank you in advance for your generous support!